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1.4 Commitment to the HAE Community
As pnfC1-INH therapy, Berinert
®
replaces the missing
human C1 esterase inhibitor (C1-INH) protein to treat the
fundamental cause of HAE symptoms. With a reliable and
proven track record since 1985, pasteurized Berinert
®
has
been used in more than half a million treatments in more
than 30 countries in Europe, North and South America,
Australia, and Asia.
1
Successfully bringing this product to market around the
globe is only part of CSL Behring’s commitment to the HAE
community. CSL Behring is also committed to providing
education, services, and advocacy for HAE patients and for
the healthcare professionals who serve them.
Central to that commitment was the International Multi-
centre Prospective Angioedema C1-inhibitor Trial program
(I.M.P.A.C.T.1 and 2 studies), the largest clinical trial program
in HAE ever conducted.
CSL Behring’s reliance on leading international HAE expert
investigators, combined with its extensive clinical experience
and rigorous adherence to scientific methods, led to the
success of the I.M.P.A.C.T. clinical studies – and ultimately,
the approval of Berinert
®
as an effective treatment for
attacks of HAE in numerous countries. CSL Behring has an
active clinical research program to further improve existing
and to provide new treatment options for HAE.
Another way in which CSL Behring demonstrates its
commitment to the HAE community is by convening groups
of physicians who specialize in the treatment of people with
HAE. These global scientific forums and advisory boards
have provided opportunities for professional exchange.
To ensure access to, and appropriate reimbursement for,
high-quality, plasma-derived and recombinant products,
CSL Behring works with governments, managed care
organizations, legislators, and regulators around the world.
CSL Behring also created several online resources for
clinicians and patients, including:
and
in
English, and
in German, as well as
local sites in Canada and Japan.
These content-rich sites offer clinical articles, diagnostic
tools, and opportunities for professional exchange. They
also offer patient services, such as a password-secured
HAE journal in which patients can track their symptoms,
a downloadable brochure to share with friends, teachers,
or relatives, and a family tree online tool to trace the HAE
gene. The sites also feature links that connect patients with
important advocacy groups across the globe.
CSL Behring is a proud supporter of the International
Patient Organization for C1-inhibitor Deficiencies (HAEi),
a nonprofit global network of national HAE patient
associations that is dedicated to raising awareness of
C1-INH deficiencies around the world. On a national level,
CSL Behring has joined several patient organizations in
supporting special events like Rare Disease Day or HAE
Awareness Day
), and in sponsoring
programs and providing support to the HAE community
from education to advocacy. Recently, CSL Behring’s
commitment to providing access to therapies for patients
with rare diseases, and its pioneering work in developing
and manufacturing therapies used to treat rare diseases has
been awarded with a EURORDIS (European Organisation
for Rare Diseases) Award.
CSL Behring is dedicated to researchand further development
of technologies, and remains committed to continually
improving treatment options for patients with HAE and
related diseases. This brings hope for families whose lives are
affected by HAE and the healthcare professionals who serve
them. CSL Behring’s innovative approaches to research,
health education, high-quality products, and excellent
service promise to sustain that hope well into the future.
